Annoying cough

[Elisa82]

I have obliterative bronchiolitis and I'm on dialysis. For the past 3 weeks I've had a cough and recently my appetite hasn't been good. Had a chest xray which came back clear. Got blood tests done and there is no infection, just low in phosphate because I'm not eating so good. Have had antibiotics from doctor which haven't helped. I'm at my wits end, it's driving me mad. Seems like I'm throwing everything at it but nothing is helping. Breathing has been bad now and again.

[Katinka46]

Morning Elisa

I went back to read your posts and I realised why I hadn’’t picked up on you before: you joined the forum before I did. I am interested in members with this rare disease, there are a few of them here. I have not had a firm dx of OB, which is why I have down to the Royal Brompton Hospital recently. My consultants in Leeds think it is a possibility. I can’t think what else it could be.

However, after all that pre-amble, I can’t help your query. I do not have a cough, or congestion, mucus production. I conclude that my OB is “purely” fibrotic. But I wanted to make contact, and welcome you, three years late, to our Zebra club.

I should like to know more about your case

All the best

K x

[Elisa82 in reply to Katinka46]

I had never heard of it either. I live in Northern Ireland and the hospital sent me to the Brompton who diagnosed me

[Caspiana]

Hello Elisa82 .

Like Katinka46 and yourself I also have BO. I have started coughing , this started just before summer kicked in. I take x-rays at every doctor's visit but they are always clear. The doctor has offered me medication to help with the cough but I don't feel I need it yet. I did discuss it with him and he thinks its a progression of the disease . There doesn't seem to be a whole lot that can be done.

It also occurred to me environmental issues may also play a role. Pollen, dust and fumes can easily irritate out delicate lungs.

I'm sorry I'm not much help. I hope you feel a bit better soon.

Cas xx 💐

[Elisa82 in reply to Caspiana]

I never really thought that it could be the disease itself. It's been stable for a long time, but then the cough arrived and it started to get bad. I'm on azithromycin 250mg three times a week. Had to stop them while taking the antibiotics my gp gave me. Those antibiotics were useless, now back on azithromycin

[Caspiana in reply to Elisa82]

I'm sorry you're going through this difficult patch Elisa. xx

[Ccupcakes]

Hello Elisa

I too am an OB zebra, like Katinka and Caspiana, diagnosed in February this year. I'm so sorry you are coughing badly, its horrible isn't it?

It would seem that this disease affects us all differently sometimes, I guess that's true of every condition though, for myself, yes I do sometimes cough, not often but when I do it is so irritating!

It feels like the mucus is stuck in a dead end and just shifts around, trying to find a way out, eventually it comes up but I have learned how to speed it up on its journey. I use the breathing excersises from the British Thoracic Association, the ones about huffing, basically, instead of coughing hard and hurting or straining, you push Sharp breaths out from the base of your tummy , empty your lungs as far as you can, I can feel the gunk move when I do this, and eventually it finds its way up far enough to get rid of.

I would have to say here that I do have mild Bronchiectasis as well, and that causes some mucus and complicates infections.

Do stay in touch, and I hope this has been helpful. As already said, we are a rare breed and have to stick together!

Wendy xx